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NCD Update on Policy Projects

Thursday, March 30, 2023

March 30, 2023

WASHINGTON–The National Council on Disability as an independent federal agency makes policy and legislative recommendations to the President, Congress, and federal agencies to enhance the quality of life for all Americans with disabilities and their families.

During the February 16, 2023 council meeting, members offered proposals for policy projects for FY24 (beginning October 2023),  and voted to prioritize a top three for funding and staff resource allocation. The outcome of that vote was to prioritize the following three projects:

  • Disabled and Living in Tribal Lands
  • Persistent Barriers to Full Integration for People with Mobility Disabilities
  • Supplemental on Tax Project regarding Misclassification of Employees with Disabilities

The Council also voted to designate a completed project of the prior Council Membership, a report on the impact of extreme weather events on people with disabilities, a priority of the current Council for purposes of moving the completed project to final edits and a vote for approval.

The newly designated priorities as well as in-progress projects for 2023 follows:

Health Equity Framework Year One Progress Report

Released March 2023 – On February 14, 2022, NCD released its first-ever Health Equity Framework, to address the longstanding healthcare needs of people with disabilities, and approximately a year later, issued a status report on the progress made to date.. NCD’s Health Equity Framework identifies five core recommendations, as well as numerous subcomponents, and includes: the federal administrative designation of people with disabilities as a Health Disparities Population; the federal legislative designation of people with disabilities as a Special Medically Underserved Population under the Public Health Service Act; standardized disability competency training of medical professionals; improved health data collection for people with disabilities; and the availability and use of accessible medical equipment.  

Medicaid Oral Healthcare for People with I/DD

Spring 2023 Release – Last year, NCD published, Medicaid Oral Health Coverage for Adults with Intellectual & Developmental Disabilities – A Fiscal Analysis, the first installment of NCD’s oral health care series. The 2022 report compared states’ Medicaid waiver programs that offer dental benefit to states that do not, in order to assess the potential savings of implementing basic dental care benefits. In Spring 2023, NCD will release a follow-on report to examine the factors that discourage oral health care providers from treating adults with I/DD and from participating in Medicaid, and identify the necessary policy incentives to encourage them to do so. The report will examine the responses received from over nine hundred oral health care providers and identifies what factors are of greatest influence over providers’ decision to participate in Medicaid programs covering oral healthcare for people with IDD.

Extreme Weather Events

Spring 2023 Release – In this report, NCD will examine the adverse effects of extreme weather events and environmental hazards on people with disabilities in the United States and its territories over the past twenty years. This investigation will examine unsuccessful preparedness plans for extreme weather events and the detrimental, yet foreseeable, impact on people with disabilities the federal recovery response thereafter. This report will evaluate compliance with federal laws and the implementation of federal programs health care, housing, education, and emergency management available for people with disabilities before, during, and after catastrophic natural disasters in order to inform advocacy efforts and build a more resilient and inclusive community.

Asset Limitations Progress Report

Fall 2023 Release – In Fall 2023, NCD will release a report that examines the current asset and earning limits for federal benefits programs and their impact as a financial barrier to economic self-sufficiency for people with disabilities and recommends a path forward. People with disabilities often face economic barriers that prevent them from realizing a path to economic self-sufficiency, and unfortunately, sometimes well-meaning government programs that have not kept up with current disability policy, have contributed to this problem. Government-imposed limitations on earnings and assets, which if exceeded, triggers a loss or curtailment of a person’s benefits, which are often are essential to employment, are often one of the greatest barriers. NCD is engaging in a a series of listening sessions with a variety of stakeholders to ensure that a wide spectrum of perspectives are included to ensure a robust report.

Clinical Trials

Late 2023 Release – NCD will examine the explicit and implicit exclusion of people with disabilities from participating in clinical trials, the repercussions of exclusion on the disability community, the legal requirements of clinical trial investigators to include people with disabilities in clinical trials and repercussions for not abiding by those requirements. NCD will provide recommendations and identify good practice models to increase the participation rates of people with disabilities in clinical trials by identifying the value in including people with disabilities in clinical trials and they state and federal reform needed to address regulations that currently restrict their participation.

Cummings Decision Update

Summer 2023 Release – On January 19, 2023, NCD published Cummings v. Premier Rehab Keller PLLC: Implications and Avenues for Reform , an analysis of the United States Supreme Court’s April 28, 2022 decision which concludes that emotional distress damages are unavailable for violations of the Rehabilitation Act and the Patient Protection and Affordable Care Act. NCD’s analysis predicted that as a result of Cummings, public and private colleges and universities, hospitals, group homes, physical therapist offices, and other recipients of federal financial assistance will no longer need to remedy discrimination based on disability when the only harm of the discrimination results in anxiety, stress, depression, marital strain, humiliation, or other similar emotional pain. NCD will supplement the findings and recommendations from its January analysis by examining courts’ positive and negative treatment of the Cummings decision and its impact on remedies available under other anti-discrimination statutes. 

Tax Policy - Supplemental Survey

Ongoing 2023 – NCD is currently examining a 1965 tax exemption for people with disabilities in congregate work settings (“sheltered workshops”) that may restrict them from attaining employment status for federal employment tax purposes and other employment related benefits. This tax exemption creates a conflict of laws between the Fair Labor Standards Act and the Internal Revenue Code – two sovereign employment statutes governing separate jurisdictions - results in “dueling classifications” that leaves people uncertain about their status as “clients,” “independent contractors,” or “employees.” In an expansion of this project, NCD will gather information about how sheltered workshops classify individuals with disabilities for federal employment tax purposes. This information will be used in support of NCD’s current research into the short-term and long-term financial implications of the 1965 tax exemption.  

Fetal Medicine / Gene Editing

Fall 2023 Release – In 2019, NCD published its Bioethics and Disability: Report Series, regarding negative biases and inaccurate assumptions about the quality of life of a person with a disability that are pervasive in major healthcare settings and can result in the devaluation and disparate treatment of people with disabilities. This year, NCD will publish an additional installment in this  bioethics series and examine the history, arguments, science, and consequences of fetal medicine interventions and germline editing on the lives of unborn people with disabilities. NCD will interview experts in biomedicine, genetics, fetal medicine, disability rights law, biomedical ethics, and disability stakeholders to examine the legal and ethical concerns about fetal medicine and genetic editing and the underlying societal impact of this developing medical technology and its impact on people with disabilities.  

Native Americans with Disabilities

Toolkit Release Spring 2023 – This year, NCD has two projects underway pertaining to Native Americans and Alaskan Indians with disabilities. First, NCD, in collaboration with the National Indian Coalition on Aging (NICOA), will  update NCD’s 2003 toolkit, Understanding Disabilities in American Indian and Alaska Native Communities: Toolkit Guide, which will provide a comprehensive resource manual with information about the programs and services available to  people with disabilities living in tribal lands. The second project will commence in 2023 for a 2024 release and seeks to evaluate the current economic, educational, employment, and general health of people with disabilities and analyze new policy developments in education, health care, vocational rehabilitation, and independent living. This report will measure the progress made to improve the lives of people with disabilities living on tribal lands since NCD’s 2003 report, People With Disabilities on Tribal Lands: Education, Health Care, Vocational Rehabilitation, and Independent Living.

Mobility Disabilities

2024 Release – NCD will examine physical barriers that people with mobility disabilities encounter on public rights-of-way (sidewalks and other pedestrian routes); federally funded fitness and recreational facilities; and airline travel. It will analyze weaknesses in current regulations under Section 504 of the Rehabilitation Act and Title II of the Americans with Disabilities Act to identify opportunities for regulatory reform or, in the alternative, determine if new legislation is needed to specifically address the barriers that impede the inclusions of people with mobility disabilities. Despite the nearly fifty years of federal nondiscrimination legislation requiring the removal of architectural and other physical barriers, these barriers remain prevalent today and continue to prevent the full inclusion of people with mobility disabilities into society.

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